Crohn's Disease

[Lissie2414]

Hello
I was just dianosed with Crohn's disease last week. The doctor has put me on Asacol. Can anyone tell me anything more about this disease. I have been researching it on the internet for the last week but I would really like to chat with people who are going through it as well. They say that my case is mild which is good but I am still scared. I have never had anything like this happen to me before. I do not know what to think exactly. I am still in shock. Any insight would be great. Thank you
Lissie

[Canadian girl]

Hi Lissie,

The information on Asacol is basically 5-ASA and is effective for some people. My sister who has both Crohn's and Ulcerative Colitis, was on that med. I have severe Crohn's and was on Pentasa. It did not work for everyone. You are in a mild stage which is good because if you keep diary of your meds and stick to a good diet you should be okay. I have had Crohn's for just over 9 years (diagnosed and had surgery) but have had it since 17 yrs of age. If you are in a mild stage, ask your doctor about Entocort (insurance should pay for it, cause it is expensive) , yes it is a steroid but very mild with less side effects of Prednisone. It should help maintain your flareups to a minimal. I know you are afraid, but stress is a culprit to bringing it on worse. Everyone is different on their symptoms and medications, my other 4 brothers and sisters have a form of Crohn's or IBS. Yes it is very hereditary. Chew slow and stay away from raw veggies, popcorn and generally soft foods. Stay away from smoking, alcohol and stress, they agitate the bowels. If you must go on Predisone, dont let the doctor keep you on it long term, the side effects are not pleasant. Oh you will feel fantastic,at the time, then the side effects kick in later. Keep well if you have any questions, I could help. Also being as I am a Canadian you also have an American CCFA Crohn's and Colitis foundation. Good luck, think positive.

Penny

[This message has been edited by moderator2 (edited 12-05-2002).]

[Lissie2414]

HI Penny
Thank you so much for responding to my questions. I am now at week 3 and I think I am doing better handling the fact that I have a chronic disease that I will never get rid of. So far I have only had one flare up and that was back in June/July. It has taken the doctors this long to decide that it was Crohn's. I have slight inflammation in the last 6 inches of my small intestines and that is why I am on the Asacol. I have been taking it for almost 3 weeks now and my stomach cramps seem to have just about subsided. I have been keeping a diary for the last two weeks of what I can eat and when I go to the bathroom or have cramping. I have an appt with my regular doctor tomorrow to go over everything and I want to get a referral for a nutritionist as I am trying to get pregnant and want to make sure that I am getting everything that I need. I can not believe that you and all of your siblings have some form of Crohn's and IBS. No one in my family has it except me. I do not quite know how I feel about all of this but I am doing better then I was. It is really scary and the internet does not always help. Thank you for your answer. How often do you have flare ups? Do you know what causes yours? Are you able to do everything that you want to do? Sorry for all of the questions but you are the only person that has answered back on several sites where I have posted questions? Thank you again
Lissie

[Canadian girl]

Hi Lissie, you are welcome. Best of luck on getting pregnant, though I should warn you, when I was diagnosed with Crohn's in the beginning the gastroenologist recommend I dont have anymore, turns out I chose a few years early not anyways. The problem with pregnancy is you cannot be on a lot of medication or any if can be helped. You sound like you are in the beginning stages and my first stage was when I was 17. I had bad periods (extremely bad) and diarrhea, contantly and every time I moved, (stress related) I got sick. NO one really knows what actually starts it, but refined sugar (I admit probably too much of it) and a lot of stress in my life, which some I may have created.

I have had one operation of 6 inches of intestine and was almost normal for 8 years, then I had a break up in a commonlaw marriage 4 years ago and it started up again. My first attack since my surgery was last May 24th, July and early Aug. They thought it was a "twisted bowel" but I knew from my old experience that it was an obstructed bowel. Believe it or not it was from a lodged Bratwurst (chewy weiner) and have never eating one since, another was from a kernel of corn from soup. I dont want to scare you because my symptoms this time around are not near as bad because I caught it in time. I was on Prenisone, but finished the meds 2 weeks ago and had a colonoscopy, saying it wasnt all that bad. I was not impressed with his opinion, cause I really have to watch what I eat. My mother figured it out that every time I ended up in the hospital, I was on my period (everything swells)>

I was able to lead a normal life until this summer and now being on nothing is scary for me too. But I have been on too many medications and they are now affecting my muscles. I am waiting for surgery, but since we only have one surgeon, and I live in a small town (the surgeon is in Austrailia for 6 weeks) and now that the gastroenologist says his opinion, I will be on a long waiting list. We have good health systems, just understaffed.

I dont mean to pry, but could you tell me how old you are and how long you have had symptoms of Crohn's? My older sister never had pain until after her surgery, which they took out 16 inches, and she is on Ascol for her colitis as well. Apparently that is pretty rare to get both. She lives in PEI and I am in Northern Ontario, so we havent seen each other in 10 years. She had this for years and they took so long to diagnose us all because we are not skinny.

My first attack I lost 40 lbs in 2 months and that's how a specialist and a teaching doctor figured it out in downtown Toronto.

My advise, is unless your family doctor is up to date and knows alot about Crohn's, mine doesnt, dont let anyone tell you how you should feel. Everyone is different and only other patients can understand. If Asacol is working, that is good. Entocort is a good choice too, but up here it is $300.00 for 2 months. For mild to moderate. There is an herbal remedy called "Cats Claw" which I have heard works, I am going to try it and bought Acidophilus tablets, started last night. Tell me what your symptoms are and discuss every detail with your doctor. Good luck!

Penny

[Lissie2414]

Hi Penny
I just met with my primary doctor yesterday to discuss my disease and get a referral for to see a nutritionist. I really like her and she said yesterday that I am her 3rd patient to have this disease. She says that she reads up on it and she seems to know quite a bit but admitted that it was not her specialty and would be consulting with the gastroentologist regularly about me. She also suggested that I see him regularly for awhile to make sure that all of my questions are being answered.

I am 30 years old and had my first and only episode in June/July of this year. I dropped 20 lbs in a month. I was never overweight so this was alarming. They did a bunch of tests over the next 3 months and just last month they did an Upper GI and small bowel follow through and that is when they found the inflammation. I have a very mild case and since I have only had one flare up the scaring is minimal. My symptoms now are just slight cramping below the abdomine about 4 to 6 hours after I eat. The Asacol seems to be helping that and I only seem to have cramping at night now and it is nothing like it was before. It is very minimal. I never had any symptoms really until I had the flare up this summer at least none that I noticed. Since I was trying to get pregnant at the time and stopped because I was sick I just kept going to the doctors to find out exactly what it was. If I was not trying to get pregnant I probably would not have pursued it as much as I did and it would have been years before I was diagnosed. The doctor said that I caught it in the very beginning and if I eat right I should be able to keep it mild. (Hopefully)

As far as the pregnancy goes. Both doctors told me that it is safe for me to get pregnant on the Asacol and if it is helping I should be able to take it throughout the pregnancy. I do not know if I will do that though. They said I should have no trouble with a pregnancy and that in 1/3 of the cases it even makes the symptoms better. We just started trying again last month so I am waiting to see if I am. I wanted to make sure that I was healthy before I had a baby.

What do the Acidophilus tablets do? I have been reading a lot on the internet and I do not remember seeing them mentioned. I did hear of the Cats Claw but I have not tried that yet. I am trying to keep what I take to a minimal since I am trying to get pregnant. The other symptoms that I had/have are I was very tired, weight loss, cramping, loose/frequent stools, cramping, and anemia. I am very happy with the doctor that I have and thankfully I have a wonderful health provider so everything has been covered with a minimal cost to me. I only have to pay $15 each time I see the specialist or my doctor. All of the blood tests and other tests were covered.

Again I want to thank you for responding. I feel great having you to talk to about this. I am fascinated that your whole family seems to have this diesease or a form of it. Do your parents have it as well? My doctors told me it was up in the air as to whether or not it is hereditary and from what I have read some say it is and some say it is not. I do find it odd that they do not know what causes it. I have been racking my brain trying to figure out something. I do not like not knowing why I have something. I already have a notebook filled with things to bring to my next visit with the GI doctor. Take care and I hope you are feeling good now. Please keep in touch.
Lissie